Sunday, November 16, 2014

Good riddance, be done with you, and never come back again!

I had a post ready to go like a month ago, but I never finished it.

But today, I sit in the hospital room watching Tiffany sleep peacefully, listening to some uplifting MoTab music, and figure I should probably take a moment to write.  Wish I could say I have a good excuse for not posting anything new over the last 45 days or so.  Well, actually, maybe I do have a good reason.

But today I post, to give update to all the masses who wish to know what is going on with Tiffany.  There have been many which have heard a rumor here or there about her and are wondering what is really going on.

Let me start with the kids.  They have been doing marvelously well, with much thanks and gratitude for the many neighborhood friends who take care of the littler ones after school, driving to and from school, and many other little helps that add up to a lot.  However, they are tired of having to take a shower and change clothes every time they come home.  But they do it because they know they are protecting mom.  And then, I need to give thanks to those that have been helping us with laundry.  With the kids changing clothes, sometimes two or three times a day, laundry stacks up quite quickly.  We love and appreciate all those that help.  We wouldn't be doing quite so well without all that help, and we want to express our thanks.   And though I don't call out names (as stated earlier, there are too many people who help and if I started naming names, I would surely, inadvertently, miss somebody and I would feel awful) I do want to thank Tiffany's mom.  She has been with us every week since Tiffany came home.  She has tirelessly served our little family as she puts her life on hold.  There is no amount of words that can convey the feeling of gratitude we have for her, and for the hundreds of others that continue to help and serve me, Tiffany and the children.  Thank you, from the uttermost bottom of my heart.

And now on to Tiffany.

So, up till day 68, we have had a good ride.  No real complications in the post-transplant process.  Every week Tiffany would go see Dr. Boyer and his team and they would always come back suggesting she was far ahead of schedule, that numbers looked ecstatic.  Her platelets and blood counts have been much higher than they have been for the last three years.  She would often be found sleeping late into the morning, and having a few naps here and there throughout the day, a response the body has in trying to recover from the transplant as it produces the new cells and immune system she desperately needs.  As time continued, the docs drew down the medications that were helping her stay propped up, pushing more and more of her own body to create the energy she needed to recover.  She has been weak, and just able to move up and down stairs enough to participate in family gatherings and to be around and interact with the kids. 

As stated previously, she has been taking anti-rejection drugs that allow the donors blood and her own tissues to co-habitate without fighting against each other, a condition which if did happen is called Graft-vs-host-disease (GVHD).  However, as much as we don't want this to happen, we do want it to happen just enough... a process called Graft-vs-Disease effect... a fine line between allowing just enough rejection where the donors cells are allowed to go and kill any remaining cancer cells, but not enough to do damage to other critical organs.

Over the course of time the docs were decreasing the anti-rejection drugs in an effort to instigate this graft-vs-disease effect and we started seeing a skin rash occur in early October.  That was minimized with some steroidal cream and onward we continued until day 63 when the doctor had reduced the anti-rejection drugs to nothing.  That was Thursday, November 6th.  Things were going all right until Tuesday, November 11th when Tiffany started vomiting and having some bowel issues.  A trip with her mom up to Hunstman in the morning caused a bit of a stir as her blood test came back showing a rapid decline in her platelet count, down to 100 from the prior week to a low of 23 we haven't seen since the transplant.  They took some additional tests and told her to watch for bleeding and to plan on coming back on Wednesday to see what else might be happening once the tests came back.  She came home and about 4 in the afternoon, had some heavy bleeding.  She and I went back up to Huntsman that evening and they gave her a platelet transfusion to help stop the bleeding.  She continued to have abdominal pains that night and into Wednesday.  She and her mom went back up to Huntsman and her platelets, even after the transfusion, had dropped some more, and she had another platelet transfusion.  The tests had come back negative for some bacteria and other viruses they were testing for and told her to plan on coming on on Thursday, her normally scheduled weekly visit time, and plan on getting a bone marrow biopsy.  The docs suggested that they were trying to find out why the platelets had dropped so quickly, and the dreaded bone marrow biopsy would help them fill in some blanks.

Well, she came home and ended up in bed.  We called in our Home Teacher to help give her a blessing and shortly after, she spiked a fever of a 102.  A fever of 102 for a post-transplant patient prior to 100 days (and likely after for a while as well) can be dangerous, so we called the doctors and they had us come to the University of Utah emergency room.  We did.  And about 4 in the morning were finally admitted into the Huntsman hospital.

For the next couple of days, they did some tests, and finally concluded they needed to do a colonoscopy to find out if there was inflamation of the GI tract and take a biopsy to confirm if she had GVHD in her gut.

That was Friday evening.  Saturday morning came and the doctors said the biopsy won't be able to tell us the severity of the GVHD, but they are very sure it is GVHD of the gut and started her on a regimen of medications to start fighting back against it.  At the same time she was admitted, she also started getting a rash on her back.  They were going to do a biopsy of it as well, to see if it was GVHD of the skin, but opted not to, as it has spread to most of her back, legs, and itches like the dickens (I really don't know what the dickens itches like, but it must be something crazy).  They are positive it is GVHD of the skin and the drugs they are using to help the gut should help with the skin, so they have decided not to biopsy it.  It is likely this GVHD that is also causing the decrease in the platelets. 

And so we wait, patiently, as we seem to do a lot of over the last few years, as we wait for the fix to happen.  The docs have suggested, depending on the severity, she could be up here at the hospital at least a week, and likely longer.

So I sit here, watching her sleep.  Grateful she can do that.  She really isn't in a lot of pain, well, not the acute painful pain she was feeling prior to coming to the hospital.  Due to the GI issues, she is on a clear liquid diet and getting nutrition via intravenous nutrition (called TPN).  She has the continued normal aches and pains she has been surviving with, and from time to time abdominal pain increases and the itches come and go but we continue onward.  Knowing, or at least hoping with faith, this is a little blip in the road to recovery...

And the silver lining to all this... that this process of pain she is undergoing, is at least doing as much, and hopefully more damage, to any remaining cancer cells that may be lingering.  And we say to such cells,

"Good riddance.  Be done with you.  And never come back again!"




  1. Thanks so much for the update! Thanks for the opportunity to be a little part of your life for the past two weeks. Sue is back and won't let me remain - drat her! But prayers and love are sent your way every day! <3

  2. We pray for blessings to be with Tiffany and her caregivers, and we hope and look forward to Tiffany making a full recovery!